Wednesday, December 29, 2010

On the way into the YMCA this morning, a woman commented to no one in particular, about my kids not wearing hats and coats. They were wearing sweatshirts and fleece jackets. At this point, she had not seen me because I was with Ben getting him out of the car, but I had heard her words. When Ben and I were a few feet behind her, she asked Logan where his coat and hat were. Logan responded, "My Mom did not give me any to wear." Thanks Logan.

The woman, possibly not knowing that I was behind her, said, "I will say a prayer for your mother." She repeated that mantra a few times. Once she realized that I was right behind her, she scolded me about the hats, gloves and coats. I did not say much back to her.

Then she said, "And look at his hands (meaning Ben), they are all balled up because he is freezing." Still relatively calm, I managed to say that he is a special needs child, his hands are often in that position and he rips off hats and gloves immediately. The woman persisted with her comments stressing about how she has worked with those children and he needed a hat and gloves.

I lost it. I have a terrible temper and 99% of the time I keep it under control. I called her a Bitch, rolled Ben into the YMCA lobby and let her have it.

It took me a good hour to calm down. This is the second time I have had an adult say something to me. The first time, the person said something out of ignorance. We were able to turn the interaction into a learning experience for both of us without it getting out of control.

I practice all the time, in my head, about what I would say if someone were to make an inappropriate comment to me about Ben. I think of possible scenarios and determine how to handle the situation, and what I would say. Today taught me that it is hard to be prepared for everything. I felt blind-sided by this woman's comments and attitude.

The Y is a very safe place for our family - everyone knows and loves Ben. My guard is never up - it does not have to be. I do not expect anything negative or rude to be said.

I think I may ask a staff member to give this woman the address for this site. Perhaps she will read it and understand. Or perhaps not. That is her choice. At least I will feel that I have had some closure to the situation.

I did realize afterward that I have had a few positive interactions with this woman while on the treadmill beside her. Maybe she was having a bad day today.

In yesterday's post, I said we are looking for people to help on our virtual pit crew. Here are ways for you to get involved:

1. What's in a name? Help us determine our team name. Submit your ideas in the comment section.

2. Raising the Dough - In order to raise funds for our $50 registration fee and the summer camp scholarship fund and spread the word about this website, we are offering these two-sided bookmarks for $10 each. $7 of each bookmark purchased will be sent directly to the registration and Summer Camp Scholarship Fund.

If you are interested in purchasing one or more bookmarks, please email me directly at vanessainfanzon@gmail.com. Let me know how many you would like to order. I will send the first set of orders to Snapfish by Friday, December 31.

3. We are here to pump you up. Send us your suggestions on how to train for this race. You've watched the real Amazing Race, what pitfalls could they have avoided if only they had listened to you?

4. If you won't join us, beat us. Form your own team and compete against us. Register with Margot Howell at 704-432-4328 or Margot.Howell@mecklenburgcountync.gov or check out the website at Therapeutic Recreation.

5. What good are fans? Plenty good enough for us, Mr. Dylan. Follow on Facebook.

Friday, December 24, 2010

This is a great activity to do next week when the kids are off from school.

Set table ahead of time.

Supplies

Approx a 12” x 12” cardboard or baking pan covered tightly in tin foil. This will serve as the platform for the house. If you use a baking pan, make sure it is not one you will need soon.

A cardboard foundation for the house such as individual juice boxes (taped together), box from snacks, cut off the bottom of a ½ gallon OJ or milk carton. This will determine the size of your house. I recommend small.

Thursday, December 23, 2010

This was the epitome of an anticlimax, but typical of how my life usually goes. I was diagnosed with bronchitis on the Wednesday before the race, and even I was thinking about ditching it. BUT the husband, who knows me well, said I better go. "You will be sad to have worked hard all year long not to finish the last one" were his last words as he nudged me out of the bed. I have a feeling he wanted more room in the nice warm bed and a few hours to dilly dally around the house. Without me around, there's no hanging lights, fixing angels on trees or making more fudge.

So I got out of my warm bed, and while hacking up half a lung drove 30 minutes into the boonies. I got lost, did not have my cell phone, and most likely, I was on my last gallon of gas. Eventually, I found the location, conveniently next to a cemetery, because I was going to need it after this race.

I ran the race, mostly. The route was through a Greenway in Kannapolis, NC, although mostly brown this time of year. I stopped twice to walk up hills. When I had a coughing fit, I thought my lungs were on fire. I decided not to cough again during the race.

Did I mention I forgot/half decided not to take any medication before running the race. I was in the car when I remembered I had not taken anything and out of laziness I determined that it was the best decision to run without anything foreign in my body. Okay, perhaps not the best decision making skills put to use.

I finished in 31 minutes, which in my condition, I am more than satisfied. After I ran it, I felt very sick and the rest of the day was a tough one.

Tie the ribbon or string on one end. Then take your decorations and tie them to the trees and watch the birds feast. It took a few days for the birds to find ours, but once they did, they ate them all.

Tuesday, December 21, 2010

Logan's class went caroling in the neighborhood this week. They sang the song below at the firehouse and two restaurants. They were a big hit.

Here are the words, just in case, you are looking to liven up your holidays with a special song:

I Want A Hippopotamus For Christmas

I want a hippopotamus for Christmas
Only a hippopotamus will do
Don't want a doll, no dinky Tinker Toy
I want a hippopotamus to play with and enjoy

I want a hippopotamus for Christmas
I don't think Santa Claus will mind, do you?
He won't have to use our dirty chimney flue
Just bring him through the front door, that's the easy thing to do

I can see me now on Christmas morning, creeping down the stairs
Oh what joy and what surprise when I open up my eyes
To see a hippo hero standing there

I want a hippopotamus for Christmas
Only a hippopotamus will do
No crocodiles, no rhinoceroses
I only like hippopotamuses
And hippopotamuses like me too

Mom says the hippo would eat me up, but then
Teacher says a hippo is a vegeterian

There's lots of room for him in our two-car garage
I'd feed him there and wash him there and give him his massage
I can see me now on Christmas morning, creeping down the stairs
Oh what joy and what surprise when I open up my eyes
To see a hippo hero standing there

I want a hippopotamus for Christmas
Only a hippopotamus will do
No crocodiles or rhinoceroseses
I only like hippopotamuseses
And hippopotamuses like me too!

Monday, December 20, 2010

I have been behind checking Ben's artwork from school - sometimes he brings home a stack for me to sort through each week. I noticed these two turkeys...late getting to this page, but cute none the less.

Thursday, December 16, 2010

The day we arrived in NY for the Thanksgiving holiday, we saw my sister's children - Jackson, Ethan and Samantha. Samantha is two years old and loves Ben. We have been fortunate to see the cousins quite a bit this summer so the kids feel comfortable around each other. We also reinforce the relationships with family videos from our times together. Samantha has known how to say Ben's name for a long time and talks about him to my sister quite a bit. Seeing Ben is a big deal to her.

My sister does a good job talking to her kids about Ben and helping them understand that he communicates differently than other kids. She explains how Ben loves each one of them, but may express it differently.

Ben loves his cousins too. We watch the same videos and look at the same photos they do. Ben's favorite home video is Family #4 which features a mountain trip with the cousins. Ben literally gasps with excitement when he sees the first scene come on.

So when Samantha approached Ben that first day, he was just as excited, if not more, to see Samantha. And he showed it by grabbing her hair with a vice-like grip. Of course, Samantha reacted with crying and we quickly pried Ben's hands off Samantha's hair, but not before he wrenched a chunk of her hair from the roots. To say she was in pain would not do it justice. I am sure the pain was horrendous, but the fright from feeling attacked may have been worse.

I tell this story because I think we can learn from the way my sister handled the situation with her daughter. She comforted her in every way possible, made her feel physically safe by removing her from the situation and did not force her to interact with Ben. However, she did reinforce what she had been saying all along, that Ben loves her and did not mean to hurt her. It took Samantha, rightfully so, a few days to feel comfortable again around Ben. By the end of our time in NY, I believe she felt okay with him.

For me, I am reminded that when Ben gets excited around people, his way to show love can really hurt. Ryan or myself need to be involved in these interactions to make them positive for everyone.

Wednesday, December 15, 2010

Since before we had children, Ryan and I visited McAdenville, a small town south of Charlotte, that calls itself, Christmas Town, USA. This 55 year old tradition of displaying lights and decorating each house on the main street is described on the website. It is a fairly remarkable endeavor for this town to take on each year. I can only imagine what the fine print reads on the real estate agreements for purchasing a house on the main route.

Since having children, our tradition has morphed into dining at the local restaurant and taking a walking tour of the town with friends and neighbors. Many of the people who join us know Ben from when he attended preschool at 3 and 4 years old. They are the teachers who have become part of our family.

The smile on Ben's face is not surprising - he is surrounded by people who love him very much and eating peanut butter pie. Life does not get much better than this.

Tuesday, December 14, 2010

A morning ritual at our house is the making of the smoothies. Ben drinks a smoothie every morning before school. His favorite flavor is a derivative from a favorite dish he has eaten since he was one year old - peanut butter and banana blended together. It is full of calcium, protein and calories and a whole lot better than other breakfast alternatives promoted to kids.

Unfortunately for Ben, Sean has taken to drinking this drink also. Ben does not seem to mind sharing because Sean brings him his drink and watches Bob the Builder with him.

Sunday, December 12, 2010

For over 13 years, Ryan and I have been buying our Christmas Tree from the same lot near our home. This tradition has a lot of details to it: we get it the Sunday after Thanksgiving Day, we take a photo of us at the lot and we choose a Charlie Brown tree from the sale rack. Sometimes we get short and stout, others times, full on one side and naked on the other. This year we have tall and skinny. It's a 4 week commitment, we can cope.

This "dry run" Amazing Race started and ended at Marshall Park. Fifteen teams piloted the 4 mile course around Uptown Charlotte, solving clues and riddles to help them find their way through town. Each clue instructed teams to take a picture of or answer a question about a specific piece of Charlotte history or art, and check their answers in at 6 stops along their route.

Over 150 children with special needs attend camp though Park and Recreation’s TR Department. Children from ages 3 to 21 with physical, mental and emotional issues are able to participate in an all day summer camp for up to 7 weeks. The camp features field trips to Lazy 5 Ranch, Space Kidets and other fun places in the Charlotte area. Campers are kept active with developmentally appropriate activities including but not limited to swimming, playing ball and creating art projects.

In 2009, $16,000 was given out in scholarships and in 2010, only $8,000 because of budget shortfalls. Money raised through Amazing Race will be used solely for these camp scholarships.

The first official Amazing Race will be held on Saturday, March 12, 2011. Registration is $50 per team. Teams of two can be sponsored by a business or individual donors, and will compete for bragging rights as the Therapeutic Recreation Amazing Race 2011 champions as well as prizes.

To find out more information on how to register your team, contact Margot Howell at 704-432-4328 or Margot.Howell@mecklenburgcountync.gov or check out the website at Therapeutic Recreation.

Ryan and I will be teaming up this spring for Amazing Race. Look for more about our team name, training schedule and how to sponsor us. If you do not live in the area, we will offer ways for you to participate in our virtual pit crew.

Thursday, December 9, 2010

In 2005 & 2006, Ben visited the Shriners Hospital in Greenville, SC several times. We became acquainted with the Shriners and their hospitals through a co-worker of Ben's grandpa, after she gently harassed him for months about the work they do for children. At the time, we did not have great insurance, were new to the medical world of orthopedic care, so we gave them a try. The Shriners provided us guidance, free assistance and medical attention for Ben.

When Ben was accepted into the Medicaid program, we were able to use local doctors. The drive to Greenville was hard on me with two little boys and it was usually an all day venture by myself. Although I am happy to have more convenient options now, I am sad not to have the Shriners' expertise and caring atmosphere.

Every year since Ben began treatment at Shriners Hospital, we have received an invitation to attend their annual Christmas Party, held at their club in Charlotte. This year was our third one, after taking a two year break. I am so glad we attended. The first two were awkward for both Ryan and me. We were getting used to the idea of Ben being a child with special needs and being parents to him. Being thrown into a party situation where many children were in wheelchairs, walkers and braces was too much for us. We went into emotional overload.

This year was different - we had fun and enjoyed our time at the party. Knowing what to expect and being more comfortable in our own skin, it was just easier. We have dealt with the early emotions of discovering that our child is different, and when we attend an event like this where everyone is in a similar situation, rather than feel like outsiders, we feel good to know we are a part of this group of families.

The Shriners know how to throw a party. Between clowns, carnival games, balloons, candy, hot dogs, chips and cookies - this was a party made for kids. Santa AND Mrs. Claus attend this very special event, ready to give hugs and toys. Each child who visits with the Claus' is given an age appropriate toy. Ben, the movie loving boy that he is, received one of the Spiderman movies. (I think Ryan had something to do with that choice.)

The Shriners organization dedicates themselves to raising funds to help children. They are wonderful group of people, and I feel fortunate to have had the opportunity to be a part of their world. I think all of our children will gain a good understanding of what it is like to give selflessly, treat everyone with kindness and be a part of something bigger than themselves.

If you are not familiar with this group or have only thought of them as the men wearing those silly red hats, please check out their websites. I promise you will be amazed:Shriners HospitalShriners International

Wednesday, December 8, 2010

The Holly Rod Foundation, founded by Rodney and Holly Robinson Peete, who themselves have a son with autism, are having a holiday giving campaign by donating iPads to families with children diagnosed with autism,
and who are either non-verbal or have limited verbal ability. Children must be on the autism spectrum.

The iPad, with its many apps, is an excellent tool for communication and can be life changing for some children. There is a financial requirement - single family annual > gross income of less than $35,000 or dual family annual income of less than $50,000. Please spread the word to those you know affected by autism.

Tuesday, December 7, 2010

My memories of Sagamore Hill, home of Teddy Roosevelt, are all wonderful. I visited there numerous times as a child, teenager and adult. I have not been back in more than twelve years, but everything is as I remembered it.

When in New York for Thanksgiving, I suggested we all visit. This meant my sister's family with three kids and my family too. We had some concerns about how the kids, all six under the age of seven would react to an old house with a lot of history. We never gave a minutes thought about how we might be received by the Park Rangers. That single omission turned our trip into a memorable one that we will be talking about 10 Thanksgivings from now.

The estate that the house and museum sit on are magnificent. Our kids had a ball climbing trees, running, jumping and chasing each other around. We even hiked a trail through the woods that lead to the beach, something I had never done before.

When we arrived at the museum with all the kids in tow and Ben in a stroller/wheelchair, the Park Ranger made it his personal business to see that Ben was comfortable. He awarded Ben with a ranger badge within minutes of stepping into the museum. The other children were given one later, more as an after thought. He also saw that we needed a paper towel for Ben's face and got one for us without our asking. Ben could not make it on the trail to the beach so he stayed behind with Ryan. He was rewarded with two Sagamore Hill patches, clearly an extra only reserved for special visitors. This Park Ranger went out of his way to make our visit extraordinary and we appreciated it.

To view the inside of the Roosevelt home, you reserve a space on a tour lead by a different Park Ranger than the one at the museum. We were signed up for the noon tour. To be fair to the Park Ranger, we were late arriving for our designated time. This was our first offense of many in the eyes of this Park Ranger. We quickly began a downward spiral. Besides being late, Ben's wheelchair through him for a loop - there were no ramps or elevators in the house. We already knew this and had planned to keep Ben on the first floor and swap out adults to stay with him. Although this did not suit the Park Ranger, he could hardly argue.

The first room he showed us was Roosevelt's library - a beautiful room filled with treasures from his travels like a waste paper basket made from an elephant's hoof and three-foot tall tusks decorating the entry way. The children guessed all the types of animals hanging on the walls and draping the floors. Kids being kids, they asked a lot of questions. Logan's questions focused on how everyone died who had lived in the house. Giving the answers to those questions was the only time the Park Ranger seemed happy.

Throughout the tour, the Park Ranger made comments under his breath and directly to us about our group. He was clearly dissatisfied with us. About 15 minutes into the tour, Ryan arrived with Sean. This was the last straw for the Ranger, and he growled, "This is not a tour, this is chaos."

Suffice it to say that the Park Ranger was not sorry to see us leave.

We will forever remember this experience at Sagamore Hill because of our interactions with the Park Rangers, good and bad, caring and comical. And I see us quoting this Park Ranger in times of delightful craziness when kids are inquisitive and active, and we need to make light of the situation.